My Nursing Home Patient Leaves Hospice Care

Whenever I speak to groups and mention that one of my patients was released from hospice care, audience members seem surprised. This usually happens when I tell Raynell’s story. Raynell, my diabetic hospice patient with dementia, shared a room with four other patients at the nursing home. Her roommates included an imaginary admirer named Robert, whom she loved like the devil loves holy water. Conversing with Raynell required that I drop to the floor periodically and search for Robert under her bed. This was preceded by her screaming, “Get him! He’s going under the bed!” after he (affectionately?) pinched her tingling diabetic legs. But one day, she surprised me with talk about leaving hospice care and the nursing home:

Excerpt from "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

Raynell requested my help by saying, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.”

“Whoa! That’s a surprise! I didn’t know you wanted to leave here. Are you sure moving is the best thing to do while you’re not feeling well?”

“Lately, I’m feeling much better. I need a change. Even Robert had to leave, so you know it’s bad. But I’m very glad about that. He’s gone to live in California. I don’t think he’ll be coming back again.”

“A lot sure has happened since I visited you last week. You never said you wanted to move before or that the other people who live here bothered you so much. All this really shocks me.”

I thought about this interesting conversation a while. It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she ever said Robert wasn’t hiding under her bed. Two weeks later, she was released from hospice care because her health really had improved. She moved to another nursing home near her son’s house. I guess Robert knew his time was almost up and decided to leave before he got left.

© Frances Shani Parker

Yes, it’s rare, but patients are released from hospice care. Some die within months of leaving, and some live at home or remain in nursing homes. Consider that with various diseases causing the need for hospice care, it is difficult to predict someone’s death with accuracy. Also, receiving quality healthcare and support from others can improve a patient's health. And when an imaginary admirer named Robert knows it’s time to leave, the patient may be moving in that direction, too.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Hispanics: Caregiving and Diabetes Research (Video 1:49 mins.)

As a hospice volunteer in Detroit nursing homes, it was not unusual for me to have regular contact with patients who had dementia. One patient named Raynell (pseudonym) is particularly memorable because she had both dementia and diabetes. This excerpt from my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” describes how she attributes her diabetic symptoms of tingling and numbness in her legs to an imaginary man named Robert who was in love with her.

“Robert was an imaginary man who passionately loved Raynell, my eighty-year-old hospice patient. It could be said that he shared a room with Raynell and her three roommates. His presence demanded my attention many days when I went there to visit her. He stole sweetness from the moment by repeatedly pinching Raynell’s stout legs. He made her feet rise by pushing up her mattress. Strategically positioned near the foot of her bed, he escaped under it quite easily. That’s how Raynell explained the turmoil he caused her. I pulled up a chair in her world each week and made myself at home. While I respected her condition, often letting her take the lead in our discussions, I always remained mindful of my role as volunteer.“

© Frances Shani Parker

“Medical News Today” reports results of a study released by the United Health Group's Evercare® organization and the National Alliance for Caregiving (NAC) with these results:

1) In America, more than one third of Hispanic households (36 percent) have at least one family member caring for an older loved one. This is a larger percentage than other U.S. households.

2) More than four in 10 Hispanic caregivers (41 percent) have changed their work situation either by cutting back on hours, changing jobs, stopping work entirely, or taking a leave of absence. This is compared to 29 percent among non-Hispanic caregivers.

3) Most Hispanic caregivers are taking care of loved ones with diabetes, including 23 percent of loved ones with a form of dementia.
A 2007 Centers for Disease Control and Prevention national examination survey indicated that Mexican Americans are twice as likely as non-Hispanic whites to be diagnosed with diabetes and 50 percent more likely to die from diabetes as non-Hispanic whites

4) Reasons for Hispanic caregivng included family obligation (84%) and religion (93%).

This video titled “UMTV Latinos Living With Diabetes” showcases the Institute of Minority Health Education and Research founded by Patty Larraga.


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Hospice and Nursing Homes Blog

Hospice and Nursing Home Poem: "World Champion"

It occurred to me that I’ve never shared one of my hospice volunteer poems with you. A mute patient, whose legs were amputated due to severe diabetes, inspired me to write this poem. Although he endured several close calls with death, he repeatedly overcame them until he eventually died. Observers couldn’t understand why he didn't give up sooner. Because he had no legs and was such a determined survivor, I viewed him as an Olympic marathon runner.

World Champion

Your bedridden body
wins survival marathons,
breaks records in life's
Olympic Games.
I touch your skeletal chest,
feel spirit of an aging heart
that outruns the Grim Reaper
in back-to-back wins.

Some pity your amputated legs,
anguished moans, unexpected
comebacks when death
competes with bare existence.
No one claps or cheers
for your personal-best pace
toward the final race
when you clear each hurdle.

They don't understand
why you won't give up
when you defend each challenge
to clock more blocks of time.
Your laps for life press onward
as you struggle to the finish,
grin like a World Champion
each time you grab the gold.

© Frances Shani Parker

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog